Taking a test that could help save your life shouldn’t have to be a calculated risk. Every Canadian deserves these important protections so that we can all live without fear of our genetic information one day being used against us”(1)
~ Marie-Claude Landry, Chief Commissioner, Canadian Human Rights Commission
Canadians’ genetic data, or information, is now – finally – protected! This may come as something of a surprise, but the information gleaned about a person through genetic testing previously wasn’t protected under Canadian privacy laws.
Until now, we were the only G7 country in which genetic discrimination wasn’t prohibited by law. This was a prime example of legislation falling far behind technology. The Genetic Non-Discrimination Act (or Bill S-201) has just received Royal Assent; a largely ceremonial approval of a law already voted to acceptance by the Canadian Government.
This Act prohibits a person from being forced to undergo genetic testing in order to obtain an insurance – or other commercial – contract or renewal. It also prohibits insurance, and other, firms from requiring a person to disclose the results of any genetic tests they’ve already undergone.
This is particularly good news for the rare disease community in Canada, including patients living with a rare disease, the physicians and other healthcare professionals treating them, and researchers attempting to learn more about these diseases, their etiology, progression, and potential treatments.
No person with a rare condition – or their parent or guardian, in the case of a child – will any longer have to consider the very real risk of discrimination that genetic testing would have previously posed.
Prior to the enactment of this legislation, there were so many known cases of genetic discrimination – with no legal recourse – that many physicians were counselling their patients against this type of testing.
A Canadian study of patients with Huntington’s disease found that 40% of the individuals with this disease had experienced:
some form of discrimination based on their genetic test results… in the form of unfair insurance practices, being passed over for a promotion, and even being fired”.(2)
This lack of legal protections had “been largely accepted as being unfair, dehumanizing, and contrary to individual rights and liberties” that are central to Canadians’ values.(3) This was such an important concern in Canadian privacy circles, in fact, that the Privacy Commissioner of Canada highlighted it back in 2015.
At the time, he published a set of four priorities to increase the protection of personal information in this country, one of which was termed “The body as information”.(4)
When it came time to vote on this potential legislation in Canada’s House of Commons, one of the most impassioned pleas for its passage was from Member of Parliament (for Vaudreuil—Soulanges, Québec) Peter Schiefke:
I myself have had cancer twice, and as a survivor, I am well aware of the positive impact this type of technology has had and can have moving forward, not just for me… but for Canadians from coast to coast to coast.
However, without proper legislation, this reality is a double-edged sword. Billions of dollars in genome research has no doubt saved tens of thousands of Canadians affected by a variety of illnesses, because we can now detect them in ways we could not before and, therefore, treat them better than we could before. Indeed, for diseases such as cancer, time is everything.
Time is life.
It also means that there are about 33,000 new ways for people to try to seep into the personal lives of individuals, ultimately giving them the power to possibly fire, overcharge, or discriminate against them”(5)
This legislative gap in patients’ privacy protection had rapidly gained importance due in large part to the speed of medical and research discoveries in genetics. While “we have significantly more genetic tests than we had three, five and 10 years ago”(6), their development is expected to continue at an even faster pace going forward.
There’s also the increasingly likelihood that whole-genome sequencing will become part of routine diagnostic screenings; initially for patients with rare diseases and/or suspected genetic conditions, but potentially for all of us.
Imagine a future in which each of us is provided with our genetic information – to better manage our health and mitigate potential risks to it – but that same information could be used to prevent us from securing a job, insurance, or even a scholarship… Now we longer have to imagine that possibility in Canada.*
* Unless the Genetic Non-Discrimination Act, on appeal, is deemed to be unconstitutional.
References:
(1) Canadian Human Rights Commission (CHRC); and the Office of the Privacy Commissioner of Canada (OPC). New genetic non-discrimination law will promote privacy and human rights in Canada.News Release. 05 May 2017. Web:
https://www.priv.gc.ca/en/opc-news/news-and-announcements/2017/nr-c_170505/
(2) O’Connell, Jennifer (Member of Parliament for Pickering-Uxbridge, Ontario); Speech made during House of Commons Debates, regarding Genetic Non-Discrimination Act: An Act to prohibit and prevent genetic discrimination. Government of Canada: 42nd Parliament, 1st session; Edited Hansard, Number 149. 07 Mar 2017. Web:
http://www.ourcommons.ca/DocumentViewer/en/42-1/house/sitting-149/hansard#Int-9415239
(3) Leamon, Sarah E. Genetic Non-Discrimination Act Vote is Government in Action. The Huffington Post (Canada): The Blog. 27 Mar 2017. Web:
http://www.huffingtonpost.ca/sarah-e-leamon/genetic-non-discrimination-act-vote_b_15548142.html
(4) Office of the Privacy Commissioner of Canada (OPC). The strategic privacy priorities. 09 Sep 2016. Web:
https://www.priv.gc.ca/en/about-the-opc/opc-strategic-privacy-priorities/the-strategic-privacy-priorities/#body
(5) Schiefke, Peter.(Member of Parliament for Vaudreuil-Soulanges, Québec; Parliamentary Secretary to the Prime Minister (Youth) of Canada). Speech made during House of Commons Debates, regarding Genetic Non-Discrimination Act: An Act to prohibit and prevent genetic discrimination. Government of Canada: 42nd Parliament, 1st session; Edited Hansard, Number 097. 25 Oct 2016. Web:
http://www.ourcommons.ca/DocumentViewer/en/42-1/house/sitting-97/hansard
(6) Adhopia, Vik. Genetic anti-discrimination law protects patient privacy without sacrificing research. CBC News: CBC/Radio-Canada. 10 Mar 2017. Web:
http://www.cbc.ca/beta/news/health/genetic-discrimination-patients-1.4018332